Tag: bloggy buddies

Even the least of us can be seen as ‘dangerous’. Some time ago, ME patients were described as ‘dangerous activist nutcases‘ by a psychiatrist on twitter. I was both outraged and baffled, but that’s no surprise.

Spurs Fan and I went to a concert in a church this week, and it was fabulous. Bridget O’Neill, Mary Coughlan, Aoife Scott, Frances Black and Sharon Shannon amazed us with their talent and their power. Frances sang of her politics, Mary sang of her troubles- I knew my oldies would have enjoyed Seduced and songs of social justice from an altar. Entertainment with an edge. The edge makes all the difference. The edge is risk taking, taboos and danger.

But reading books and listening to music isn’t often dangerous in these parts. Real life is.

Dangerous women have been in my head all week, because of the 4,000 dangerous mothers article by my mate Sharon Thompson. It’s a powerful, shocking, moving piece. Please read it. When I grow up I’m going to write as well as Sharon does.

A danger is defined as ‘a hazard, threat or menace.’ The business of motherhood is very dangerous. But you’re told, ‘you’ll be fine. You will know what to do.’…

So – Your child and yourself are alone. Tired beyond measure you’re surrounded in scary, essential equipment. Things like feed pumps and machines that beep. You hate it all but had to fight tooth and nail to get the cumbersome stuff…

This will happen again you know it will. But when? How? Will they be screaming in pain next time? Will you know what to do? Will it be at a time when you finally have a nurse? It’s right to want your little one here with you always –isn’t it?…

I myself surveyed 36 mothers of life-limited children. One question stood out. ‘Do you feel you can cope at home with your child’s condition?’ 34 mothers out of 36 said – ‘No.’ One asked me not to ask that question…

Wanting and demanding that your child’s life and death is as safe as possible should not be considered dangerous. Yet in 2016, these women are supposed to cope alone, with meagre charitable supports and when it’s all over – they’re expected to disappear and be silent. These women are expected to no longer be dangerous…

For further thinking on what it means to be a dangerous woman, see the Dangerous Women Project, full of challenge and learning.

I went to bed about 2.30am, with no hope that Remain would win. I greeted Spurs Fan some hours later with “How bad?”.

I’ve discovered the truth of the phrase “I just can’t even…” as my brain couldn’t begin to compose sentences or half thoughts without simply running out of steam. My language has been colourful.

As I’ve read the tales of those who voted Leave as a protest, never thinking it would happen, or those who didn’t believe their vote would count anyway, or those who didn’t realise that ‘the economy’ affects them, or those who believed the lies (Farage was backtracking before 8am), or those who (a favourite from a friend’s work) wanted the old lightbulbs back, a rather odd thought occurred. Those Leave voters have a big shock ahead- they believed they were doing a good thing, and I felt sorry for them. Many will be horrified as today, tomorrow and the next few years progress, and the realities bite. They don’t see it coming. They are unprepared.

Social media is ‘blaming’ the over 50s, the Labour party, racists, and people who didn’t bother to vote. But blame doesn’t help.

It seems that many people don’t recognise how they fit into politics. It’s an abstract that they have no impact on, or responsibility for- a disempowered population, now reeling. Politicians haven’t served them well, or had their interests at heart. There was no positive Remain campaign about the value of problem solving together, or collaboration or peace building. There was no discussion of the value of European support for infrastructure, communities, or social support. Or of the gap created by austerity measure so often being filled (if at all) by European money- but that would have meant acknowledging that austerity measures were causing problems.

And somehow, the “don’t listen to experts” trope was effective. Why listen to people who’ve worked in the area for years, or researched options? Why employ a plumber when the decent (white, middle aged, English) person next door watched a TV programme once about taps?

The Leave campaign played on anxieties and disconnection, made wild conjectures and told lies.

Dave has resigned, and his successor will be more right wing, more jingoistic, even more concerned with the interests of his (almost definitely a man, one of the white, middle aged, rich English ones) own wealthy clique.

I have no idea where we go from here. I’m angry and anxious, but I’m doing sentences now, so that may be progress.

We need to look after each other. We need to rediscover the kind. Blame won’t work. Balm might.

I sleep and lie about. Some days I get dressed. I’m sore and exhausted. My brain works intermittently at best. I worry about doing too much so I do nothing. Then, I do too much. I really am not good at this pacing thing. There are events to plan, meetings to go to, a new network to embrace. All the fun things.

For the last few years there has been a fair bit of talk in the ME world about heart rate monitoring. Some people benefit greatly from attempting to keep their heart rate below a certain level- stopping the boom before it happens, thereby preventing the bust.

That’s always seemed complicated, and a little beyond my comprehension. But recently I’ve begun to wonder. Sally, a local ME blogger and activist, is a natural teacher. She explains things in a way that make sense to those of us with cognitive issues. And she’s been monitoring her heart rate for some time.

At Christmas time, Spurs Fan came into a Fitbit, a wee strappy gadget for his wrist that monitors steps, sleep and much more. He loves it. It’s easy to use. It’s unobtrusive and convenient.

I don’t need all that technology.

I pondered, read Sally’s heart rate post again, and searched for heart rate monitors. They’re mostly expensive, ugly things. (Other opinions are available.) Really, I just wanted something like the Fitbit, but with a heart rate display. And, lo! Such a thing exists. It’s designed for active people, and gym use, but it displays heart rate and sends all the info to the phone for review. Of course, it also does steps, calories, sleep and other things I may never use. I’m hoping I can learn to up my physical activity safely, and to cease and desist in a timely manner. The device is hardly lovely, but was cheaper and less bulky than alternatives. (I could have paid a lot extra for a different colour.)

admittedly, not stylish

My numbers

Maximum heart rate: 220-50= 170

Safe limit for ME people, 60% of max: 170 x 0.6= 102

The fancy tech is charging now. Soon I will be knowledgeable and able to discuss numbers with the best of you. I’m going to do it properly this time.

I’ve been to a conference, feeling worthy, at the local university, on epatients, blogging and social media. It was about story telling and connection and sharing and learning and power imbalances. I spent days with amazing people, a peer amongst academics, and still got to sleep in my own bed and hug my little people.

Awesome.

I’d always intended to attend the event, but I was thrown by being asked to speak a week before. (I’d written a proposal months ago, and not considered it at all when it wasn’t accepted then.) Cue panic of research, sleep, more research, writing, sleep. I produced something and stopped writing when I got bored. I used some of my own story; I would use more the next time.

I often tell people about how all the stories matter, but appear to be reluctant to keep talking about my own. Do I think that ‘me as patient’ is too mundane to have any impact? Do I think ‘me as carer’ is out of date and the lessons have all been learnt? Oliver Burkeman’s article Why don’t we take our own advice? resonated with me. I’d encouraged one of the other speakers to apply, to tell her story, to share her experience, and yet I was freaking out when I had the chance to do so myself.

Marie on the power of stories in health, at a different event

Sally’s story from Saturday

My head is still buzzing. I have much to learn and relearn. I have ordered many books referenced at the conference. Fingers crossed my brain has the energy to read them.